Labyrinthitis and being unable to compensate.

Posted , 7 users are following.

Hi guys I'm 37 years old and was diagnosed by my GP in March with Labyrinthitis. I'm still suffering with a sort of woozy/drunk feeling 7 months on. I see ENT next week and am quite nervous as I don't know really what to expect! I know my brain has compensated a bit but I seem to be stuck on a sort of plateau where I've stopped improving. Any hints or tips??? 

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15 Replies

  • Posted

    Hi, Ben here,

    Take a look at what I wrote on 03OCT14 and prior (if you care to) and you should find out what to expect at the ENT.  They have a lot of different tests that involve lieing down on your back with your head turned different ways with goggles on that block all light.  The goggles have cameras in them and they record your eye movements to find out the effects of the movements.  They will give you a hearing test, and then blow air or water, warm and then cold, into each ear observing the eye movements.  I was strapped into a chair in a small room that spun around and tilted. I also stood on a platform that shifted and the walls moved too.  All of this is to study your ability to compensate for the different stimulas that this all presents to your brain.  But, if it turns out that you do have the Labyrinthitis, you will be right back to square one.  Exercises and patience are the answer.  You can have another attack an anytime, not being due to the original issue, but only because you can get sick again just like a cold.  The "itis" part, whether it be Labyrinth-"itis" or Vestibular neur-"itis" is the same, caused by something like a virus or bacteria that makes the area swell-up and create signals that are foreign to your brain.

    So take it all in stride, don't expect to rapid of a recovery or else you may give yourself a case of anxiety and depression.  Slow and easy, spending time between the exercises.  Staying healthy and not getting run down or exposed to cold or dehydration, and getting enough sleep are the keys to prevention.

    Hope this helps.

    Ben

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  • Posted

    I too have been  suffering since March mine hasn't improved much at all and I seem to be stuck on this plateau.  I am seeing ENT on 28th I assume they will run various tests on your ears and look into deeper and if needed request a CT scan it is a frightening condition and has ruined my life I just want to feel normal again hope you get on okay 1

     

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  • Posted

    Hi Babz 

    I thought I had that too. I mentioned it to many drs and they all said no. You'll be fine during your visit to the Dr. Keep us informed 

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  • Posted

    Hi Babz. I too have been suffering for a year now with the dizziness, ringing in the ears, and blurred vision. I have seen 3 ENT doctors and they did all the test that Ben talked about with the goggles and movements. All they could tell me is that my balance system on one side is not working, he couldn't tell me why or what it was called. Just prescribed some medicine like Valium, which I can't take and try to function thru my day. In my opinion, all 3 Drs were no good to me. I still don't know why I feel so bad everyday. I just know that I am miserable and if you are feeling 1/2 of what I feel, I'm so sorry! It's miserable! If you find anything out, please share. I am waiting for a miracle. Take care
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  • Posted

    Good luck at the ENT, let us know how you get on. You've been around these boards now since March so make sure you go in with a bunch of questions.

    One question I would ask him is how many people has he helped and does he have any testimonials? He is the specialist after all.

    I wouldn't be nervous as he won't do anything that will make feel any worse than you already feel already.

    I would be interested to know what he plans for you because you are already doing VRT through a private clinic arn't you?

    Anyhow ,,,, good luck !!

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    • Posted

      Yeah I don't know what else they can do really??? It's time and patience that seems to be the key but it's so bloody frustrating! 

      I feel I keep taking 2 steps forward one back constantly! Plus I've been diagnosed with fibromyalgia and that can cause dizziness too! 

      I'll let you know how I get on! X 

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  • Posted

    Hi, I'm a 40 yr. old female who has been dizzy since June 3rd. I've had all the tests done including the the warm/cold air test. It determined I have a 67% loss in my right ear. The ENT told me with therapy and trying to maintain a normal daily lifestyle will help but in all it usually takes 4-6 weeks for the brain to recommensate for its new center of balance. Clearly that doesn't seem to be the case with me nor anyone I've read about . Like you I started feeling better with the therapy but it seemed after awhile it just stopped. Like this is the best I will ever get. I don't know why I stopped improving. Some days are better than others but I'd like to get back to my normal self. To be able to move about without any dizziness. 
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    • Posted

      Hey! Have you been back to ENT? I'm seeing them for the first time tomorrow so I'm nervous but I also don't want them to just fob me off and not see me again! I'm 7 months in now so yes for some people maybe 4-6 weeks is the norm but I'm still constantly dizzy! It's horrible and I want my life back! Xxx
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    • Posted

      no not recently. I seen him in late august but haven't been back. I think after I'm done typing this I will schedule a follow up with him. I seen the ENT my second week of dizziness and then twice not long afterwards. he reassured me that it would go away and I guess it made me comfortable enough to deal with it , thinking it wasn't going to last forever. in the last 2 weeks I've also been having pain deep inside my ear (like an ear infection) it lasts a few minutes then goes away and it switches back and forth with ears. I also have the ringing sound back. that had originally gone away about a month ago. how nice it would be to be normal again. hope you find out some answers, good luck.
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  • Posted

    Hey, Ben here,

    I just tried to send you a link to read up on what the "Inner Ear" disorders are likely to be and what the ENT will do to test you, but it has gone to "moderation" to be cleared and may take a day or so to appear.  

    So, I am resending this to let you know that the name of the place is  The Labryinthitis and Vestibular Disorders Association.  Without the link they may let this note through. Try it and see if it answers your questions and lowers you worry about seeing the ENT.  

    I know of a few more if you would care to know of them.

    Take care and good day

    Ben

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  • Posted

    How did you get on at the ENT Babz?
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    • Posted

      Brilliant. Had a hearing test which showed I had lost hearing in my right ear. Balance tests which show the damage is in my right ear. It's uncompensated labyrinthitis that I have. I've been referred for an MRI just to check there isn't anything else going on and have been referred to neurology too. Am going back to ENT after my MRI to see a VRT practitioner too. They were really helpful and thorough. 
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